Saturday, December 2, 2017

When a 9 Of Ferritin Drops down to a 7. Anemia. Young Sheldon. Autistic Fears. Purple Hair. Timberlake. Disliking Outside and Being on the Offence of Life. (It all ties in.)

*This is a follow up to my last Anemia/ Ferritin post for anyone with the same issues. Otherwise skip if you wish to the 3 or 4th paragraph for Autistic thoughts or below that for thoughts on the Outdoors enforced in the media lately for 'healthy people' and how that does not work for a slight minority ( speaking from experience.)*

It is month two of 'Operation Aggressive Iron' and my Ferritin dropped back down to 7. Which isn't as bad as the point two I started out with. I told my therapist at my last appointment, "I think it has dropped a little, not like before but enough to feel slightly less motivated for life again." And I was right. It is amazing what two counts can do to a person's well being.

The Internal health practitioner didn't know what to do with me. I refused the blood transfusions and infusions again. "Why?" he asked. "Because I've read about the anaphylactic reactions." "Well they have a team of professionals in case that happens at the hospital. " "Um sorry, that does not reassure me. Those 'professionals' have failed one too many times." (Besides with that logic- should I go try to jump start a massive allergy attack because there is a team of professionals ready?) He just smiled. Later he asked me what profession I was in because I kept up with all of his medical terms and knew everything he was talking about from villi to urea to inflammation responses in physiology.

I can be annoying like that.

When I replied that I was not in medicine but a homeschooling mother, he replied, "Oh so you have a lot of free time on your hands." To which my irritated response was, "Actually, I read medical journals."(I use my time wisely, teach complex philosophies and...) Usually I do not think on my feet in medical situations so I was impressed that for once my fighter spirit sounded clear and logical. He seemed more amused at my response than insulted which in hindsight is probably a good thing. He asked if I had seen a Naturopath as some of my jargon gave me away. I asked him if he took issue with that. He didn't comment so I smiled and said," I believe that there needs to be a balance in medicine of naturopathy and allopathy for the human body and mind. However, I am skeptical of BOTH equally." He laughed. Which I wasn't expecting as I was slightly annoyed. However, to his credit he informed me that "Well, we will try to contain your skepticism by treating you appropriately and hopefully by improving your condition."

It was slightly disheartening though because in the last appointment he chalked my iron issues up to my cycle. When I asked about absorption he blew it off as irrelevant. This time he looked at me like I had grown two heads, kept checking his notes, hummed and hawed and said that it seems like I have an absorption issue. He said my fallen levels despite taking iron indicates that it is NOT a cycle issue. Yet he thought it seemed like inflammation but that he does not think I have inflammation. I bit my tongue because I KNOW I have inflammation. I have been diagnosed with multiple conditions of inflammation but I suppose some professionals think those are irrelevant and I am unsure what to believe myself. Also, in the last month, my dentist, YES DENTIST, and Optometrist BOTH mentioned inflammation as the cause of my issues there. Regardless, it is back to the drawing board, that has been my life in medical situations, regarding my weird blood for the last ten years. I will attempt another H Pylori test next week which is an easy test to do and I appreciate the effort to look again from the doctor.

But I am tired.

My RBC levels are finally in the "normal" range so I am not considered Anemic by standard doctors, yet the Internist said, "It is not good. You should not be concentrating on much other than getting your Ferritin up. This is not an acceptable functioning level for any human being." Sigh. Yes, I know. I FEEL it. I felt the drop. I can sense the point two deficit in my day to day existence just like I felt the7 point uptake a month ago (CLICK). With every point Ferritin MAKES a difference. My body tells me Ferritin increase is imperative but there are some things I just can not do. Like consciously risk anaphylaxis shock. I know it is ridiculous probably because I am risking a whole lot more taking the slow route...but I just can't. There was an episode of 'Young Sheldon' in which Sheldon choked on a breakfast meat ( CLICK) and could not eat solid foods for five weeks until he read a comic book which inspired him to face his fear. His older self delightfully narrated that he was finally over his fear of eating solids that day...and then proceeded to list everything else he was still afraid of.

And that's just it.

 An Autistic's brain can NOT fully get over some fears because we see the world differently. And the fears are not irrational to us but statistical. Sometimes it sucks to be well informed, researched, and not easily conforming to the masses of authority figures. We seem ridiculous to the average onlooker but in our heads we know we are smart. The world just isn't ready for us still. (CLICK this post about autistic contortionists.) We know why something is not worth the risk for us. We know why germs are scary. Because they KILL for one, and also because we have experienced misery at the hands of sick bugs and do not wish to willingly go through that sensory hell again. Which is the only way I can explain why, unless it is a last resort to death or beyond, I will not be taking the iron infusions.

My husband will chuckle often during Young Sheldon and say, "Besides the math, he is you and our eldest son. It is uncanny." Tonight I asked him, "Ok seriously?? I can relate. A LOT. Besides the math. I am transported back to a lot of moments in childhood when I watch Sheldon but how do you see it? I get I am quirky and weird and apparently hilarious to you often, but are my differences to the majority really THAT apparent? I know in my heart how much I can relate to quirkiness but I thought maybe a lot of it was in my head?" To which he snuggled in with a laugh and replied, "Oh no honey. You are one of a kind and I wouldn't have it any other way but 'Young Sheldon' does OFTEN resemble you. I can definitely see it, even now, with all your coping strategies. You normalize but yet even in normalizing you are unique. And at home your massive differences to the average people I know are apparent and I LOVE that about you. You light up life." Then he fell asleep and I was left stimming in my own thoughts which turned into this post.

It's baffling. I think I hide it so well sometimes. Growing up, the vulnerability of who I am required me to develop a hard outer shell of chameleon ability. At home I shed that to varying degrees, but still I think I am more appropriate out of necessity (and it being grilled into me at a young age) and more accommodating to people than the "average socially capable" person. So WHY does my husband still relate me to Sheldon? I get it on one level, and on another I am genuinely confused.

Add to my confusion the mongrel of chronic illness and I end up feeling a little lost. I resent my blood work results. Especially considering the efforts I go to. YET, I also feel gratitude for what I have, the bits that have improved and the fact that I get to move on the treadmill now. Granted, I am on week seven of counting calories (and going on the treadmill each day for 40 minutes at a fast pace) and I have not lost one pound. Not one. I would quit but I honestly love my time moving. It's ME time. It gets me out of my head. The physicality feels like I am going somewhere when I am not truly going anywhere. AND I don't have to go outside. It's fantastic. Thus, I will not quit, but I have quit hoping that my clothes will feel looser. The doctor told me it is not time to think on such things.

So I dyed my hair again. I tried purple. It washed out rather fast but I needed something drastic. I thought it would make me feel different. In a way it did. Colour can completely change a person's outlook. However, my tiredness did not disappear, even though my purple hair seemed to sing to me Troll's drugged up, happy anthems (CLICK) whenever I looked in the mirror. "I've got this feeling, inside my bones, it goes electric wavy when I turn it on...Got that sunshine in my pocket, got that good soul in my feet..." (Justin Timberlake*) I digress. It's an invisible illness for a reason. As I have mentioned in previous posts, my pictures can tell a completely different story. Interestingly enough the next lyrics in that song are, "I feel that hot blood in my body when it drops....ooooooo."

I CAN feel the hot blood in my body when the Ferritin drops. Ooooo. *Jazz hands.*

Sigh. It is not as fun as the song makes it sound. Despite my sometimes valiant efforts to make it so.

Yet, otherwise, life truly has many moments. I intend to take the offence in what I can instead of the defence. In friendships, in the health I CAN control, in home, in finances, in education ect. I realize that it is a paradox of both circumstances happening to me and me making circumstances happen. When I can, I try to make the changes within and without MATTER. By taking the offence in my life I choose boundaries mixed with generosity. I choose the treadmill and the health I can by eating well even without beautiful results. I CHOOSE LIFE when I feel like death. I wish to be aggressively pursuing all that is good and beautiful. And I am determined to remember that I CAN do this in mind, spirit and body.

Which means allowing myself to loathe outdoor activity. I used to feel guilty because I heard all the research about the 'joys of outside.' Plus, the entire granola movement ( which mostly I like) didn't improve my guilt. 'Build your own garden because the dirt is good for you' plus 'raise your own chickens' plus 'work outside' plus 'running builds community' plus 'yada yada yada' equalled me feeling inferior often. UNTIL I realized... Most of that IS most likely true. For the average, normal person. I am not average nor normal. This fact is not better nor worse it JUST IS.

I am happy for my dirt loving, organically minded, community minded, running friends who find fulfillment and joy from their experiences. I have tried it all. Truly I have. I hated the bugs, the sun beating down on me, the wind and subsequent earaches, the potential tetanus, the draining sounds from other people, the pets barking, the people chit chatting, being interrupted on a all added up to ulcer stress. I LOVE that I no longer have to walk outside to get exercise. I will choose driving for my errands every day and make up for it on the treadmill. I don't care if it is the opposite of what one of my favourite money gurus ( Mr. Money Moustache) says to do. I live in crazy weather conditions plus I have a chronic illness and limited energy. It's not an's how I adapt. I also have sensory overload. My time is precious to me. I will choose to drive to appointments so I can have more time with my children. Yes, I could walk with my children and do both, but that always made me snap at them because I was overloaded, tired and cranky. It also made me rely on them more because I used my energy up walking, battling the elements and could not do much at home. Now I can walk at home and then choose to go outside with my family when I absolutely want to instead of when I feel I HAVE to. When I do go outside it is now mostly for pleasure. What a relief. I can tolerate outdoors for small time frames but I will not be found around a campfire for enjoyment. It not only makes me queasy with the smell but it makes me feel like I am suffocating. If the conversation is deep, I may sacrifice this occasionally but I pay for it later. But that is what I mean by offence. I CHOOSE to pay for it in those circumstances so I am not playing defence later.

Two of my children take after me. I used to force them to play outside for their "benefit." There is a part of the pilot in 'Young Sheldon' where he is required to go outdoors. This foray out the front door is shown from Sheldon's perspective as scary and uninviting. The cars are painfully loud, the noises are scary, the swing is crazily showing gravity... He would rather read in the library about gravity or make up new algorithms or controlled experiments about gravity without having to witness it on the playground. When did we start worshipping one way of being over another?

Yes, nature can be soothing and nurturing. I am an INFJ who ironically needs nature to survive. But do you know how I create my balance? I learned to make my home into a sanctuary. I own 98 plants. INSIDE. I have an indoor mini garden. I have southern facing windows full of sunshine and the witness of elements. I stargaze and sit safely on my deck to enjoy sunshine. Occasionally I venture out on perfect weather days. I make it work. I play offence. Some view this as spoiled. I know I am lucky to have these circumstances. But I also chose them suited to who I am, what I need, and balance that with those around me to varying degrees. Outside is terrifyingly loud, obnoxious and out of control. Nature is unpredictable and vicious but also beautiful from a distance but my adventures are of the mind .... not the body. Who is to say that is less or more? It just is.

I sometimes force my outdoor hating children outdoors. I do believe they have to experience it for themselves and make up their own minds once exposed enough to see the merits and downsides. However, as long as they are getting physical activity indoors, having sun exposure or a sun lamp and taking vitamin D, and caring for the indoor plants, I now realize that each of them has varied gifts. We need our Sheldon's of the world just like we need our Penny's. (These are both the grown up versions of Characters in the show 'The Big Bang Theory which is about adult Sheldon's quirky astrophysicist life. Young Sheldon is about him growing up in Texas as a quirky atheist, non typical child.) Most people find Sheldon selfish and annoying. Both my husband, children and I find him giving and refreshing. Most people find Penny giving and funny, our entire family first found her selfish and petty. Then we eventually discussed and saw her merits and realized it truly is all perspective and understanding.

With my Ferritin struggle, with perspective, I have come to be thankful for even it. However I am lacking the understanding to WHY this is happening which furthers my struggle with it. I loathe it and I love my conditions of life. By having weird blood I constantly am on a roller coaster of health, wellness and energy limitations. Sometimes I have it all and sometimes barely anything at all. But in all stages I wish to live on the offence. I wish to take the health I CAN, let go of what I can not, and make the changes that matter. My choices will differ from my peers. I see validity in each way of doing things. But there are a few fundamentals which make life great. Sometimes they are the hard things. Birthing babies was hard and caring for them hasn't always been a picnic either but it was massively fulfilling. If I can frame my other struggles by this standard to pursue excellence, maybe, just maybe, I can own every second that this life can give?

It won't be easy. It will have struggles. I will most likely be bloody exhausted (lame pun intended) but what if that IS my new normal? Why would I judge myself from an expectation of 'normal' or 'should be'? Why am I looking in the mirror and dying ( or crying) a little from what I see? Why can I not instead see what my children see? Why can't I soak in the words my son, who is mini me, expresses while he looks at me makeup less and laughing and solemnly says, " You are always so pretty. I always visualize you as an older sister, ya know?"

My laugh stopped and I teared up when he said that, because often I think he does not like me very much...and then, suddenly he is gushing in his stoic way and complimenting me by saying I am on his level. His words were said to me last week and I still run over them every day in my head ...because this blog post? It's really about me pep talking myself into the offence. I was playing defence the last few weeks.

I lost.

So did my team.

It's time to switch tactics.

Song choice: *Can't Stop the Feeling- Justin Timberlake

Crazy Train- Ozzy Osbourne


Philip CalledtoQuestion said...

I love to hear and read all that you have to say. You are joy and wonder. I love you my "black magican".

Kmarie A. said...

Lol I STILL do not understand why those search words led to my blog. LOL. I wonder if they found what they were looking for!!!???
I am glad you love to read my words. It's nice to have you back in the blogging world for a bit to exchange online even if you are lying asleep right beside me:) Oh the weirdness of the internet life.
You are my humour, my stability, and my reminder to live well. Forever yours. xo

S said...

Exactly, a drop ( or rise ) in two points (in my case it is thyroid/ auto immune diseases) makes a huge difference ! Extreme weight gain ( or weight loss), increased depression (or anxiety), extreme fatigue, hair loss, irregular heart beat, abnormal periods/bleeding, heat (or cold) intolerance and feeling abnormally hot with a racing heart in a normal sunny day - is not fun and it plays havoc in one's life and well being. Daily life becomes extremely hard to handle, minor tasks/work ( even at home) feels like putting effort to things that seemed so easy once, and not to mention, the need to take rest even after taking a bath or brushing teeth because it drains so much energy from an already depleting source of energy. Add to that : the inability to think clearly or fearing to go outside from home because any new movement makes life physically and mentally painful.
On top of that the medicines that are meant to cure us have their own side effects which often mocks as another disease itself :) :(
Doctors and experts do laugh off at the medical knowledge of patients. I too have similar experiences. Still, I make my opinion known. Because of that, doctors agreed to give me dosages lower than what is actually required by most people or skip some medicines altogether. What pisses me of is that although they are kind and considerate, the doctors do laugh off /at a lot of things and the last time they laughed when I said I had suffocation issues inside the aircraft when I was going to my hometown. They think it was because of my anxiety not related to thyroid.
You are spot on in this paragraph and I can relate totally -
("And that's just it. An Autistic's brain can NOT fully get over some fears because we see the world differently. And the fears are not irrational ....infusions.")
--and this one - " Then he fell asleep and I was left stimming in my own thoughts which turned into this post." :):)
I confess I have the same feelings. I do think that I am more normal and appropriate and more well behaved and socially connected than most "normal " people but yet somewhere, something is visibly/invisibly different and uncanny/uncommon/ missing ( not finding the right word to describe that ). And normal people can notice this after one or two encounters. The body language, the eye contact, the topic of conversation, the tone of voice and repeating sentences, giving philosophical or thoughtful answers which people cannot connect to, "the getting lost in another world" kind of vibe, etc.etc. Actually, we are in our heads while doing all that and therefore, we can't see that. And actually, our worldview is so different that in our conversations it comes out and people can immediately spot the difference and then they find/label us as "weird". / continued below...-

S said...

When you wrote in another paragraph, "Most of that IS most likely true. For the average, normal person. I am not average nor normal. This fact is not better nor worse it JUST IS, " I nodded my head in agreement. For example, for most normal people, working hard may reap many benefits, keep them happy and active. But for me, even if I can reach 1/3rd or 1/4th of that, I consider myself fairly productive :) for my energy levels and inclinations/interests are wayy different. Even if I put my whole heart and soul into what they are trying to achieve, I will probably reach only that much, not more.

"Yes, I could walk with my children and do both, but that always made me snap at them because I was overloaded, tired and cranky. It also made me rely on them more because I used my energy up walking, battling the elements and could not do much at home." -these words also rings true and I can relate, my dear, although I have no kids. I also have issues with heat, sun rays while outside or doing gardening for long, airplanes/travels, long day at work/camp/ ( especially if it is with a group of people but with only my hubby around, it is fine as the required adjustments can be done without disturbing others ),suffocating camp fires/any fires, long distance travel, entertaining guests at home for many days, etc.etc. Yes, young Sheldon seems like my childhood and youth when I was forced to go outside.

I also love nature and have it INSIDE my home. I have a balcony garden and many house plants because I love nature but going outdoors is not possible for me. Many people comment that the interior of my home is very peaceful. What they do not know is that I made it peaceful to calm down my overwhelmingness.
I love your paragraph that comes just before the last paragraph. About the new normal. Probably you are right. Who knows what we can feel and we can be ?We may go beyond what we already know about ourselves, right ? Life is a mystery after all and it may surprise us from time to time. Even if we want to give up, yet life doesn't let us and it hangs on :))

Kmarie A. said...

S: Yea health is precarious. Points matter.
Your story is something I can relate to as well. I am sorry the doctors wracked your flying symptoms up to hysteria. Unfortunately the medical areas and professionals have a long ways to go in women's issues. Most of serious conditions started with "oh its probably anxiety" Anxiety matters but I know people who have had cancer, serious disease and undiagnosed conditions that gave them their symptoms and in turn CAUSED anxiety cus they couldn't figure out. Its unfortunate.
Lol I completely understand the working example and feeling different! I think you would enjoy watching Young Sheldon. It is refreshing!
I LOVE all of your plant photos and the lovely home you have made for yourself! Your interior IS very peaceful. Yes the new normal:) Life is a mystery and some of that is pretty awesome while others not so much- Here is to fun surprises!:) Hopefully very very good ones.

Ashe Skyler said...

Homeschooling is automatic free time!? Oooo, let me at 'im, let me at 'im!!

Purple hair looks very good on you!

It'd be a shame if people dismissed you as not being a gardener just because all your beautiful plants are indoors. You've even got the wee greenhouse, so who says you aren't a gardener just 'cause it ain't fully outside? You still count. :P

Kmarie A. said...

Ashe; I know right?!? Lol
Thank you for the purple hair compliment and plant affirmation- unfortunately it's not purple anymore but a red - the purple fades in a week 😊♥️